Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Atypical liver hemangiomas?


greenbeanie

Recommended Posts

greenbeanie Enthusiast

Hi folks! I haven't posted in a while because my daughter and I are both doing great since we removed a few certified gluten free products from our diet last spring that had trace gluten below 20ppm. In a roundabout way the rise and fall of my daughter's blood tests along with my reaction to trace gluten cc (before we knew there was any) and quick disappearance of fat malabsorption after eliminating those products actually led my GI doctor to give me an official celiac diagnosis on clinical grounds even though I did not meet the usual diagnostic criteria. So I am now getting proper follow-up, which is great. 

 
However, one consequence of this is that my doctors are taking a harder look at a variety of minor/moderate abnormalities that had come up on various tests in the past, which they had dismissed as inconsequential at the time. I have two small lesions on my liver, one of which has been confirmed as an atypical hemangioma and has remained stable in size. The other lesion may also be an atypical hemangioma or adenoma, but neither ultrasound nor MRI could get a clear picture of it. An abdominal CT scan is recommended, but I've had multiple CT scans and other high-radiation tests over the past ten years, and I'm reluctant to get another one when the lesion is almost certainly benign and the CT scan might not even get a better picture of it than the MRI anyway. My liver is otherwise normal in size and appearance, though I do have a couple small cysts on my spleen too that they are not concerned about. My recent liver panel showed normal enzymes and other blood tests. I had a positive ANA in the past that has normalized too. I have no symptoms, and the liver lesions were an incidental finding from my GI's original work-up a couple years ago. I'm seeing a liver specialist in a few weeks. Meanwhile, I did find a recent article about an association between celiac and hepatic hemangiomas:
 
Open Original Shared Link
 
Has anyone had a similar experience with multiple atypical hemangiomas or adenomas? Did they grow or shrink over time? Suggestions for what questions I should ask the liver specialist? 
 
After so many years of trying to get doctors to take my concerns seriously, it's odd to be in a position where I actually feel sure that the rest of the weird stuff isn't serious and will keep improving with time, whereas my doctors are suddenly treating everything as significant. Both liver lesions are small (less that 1.5cm). I obviously don't want to ignore a problem that really could be serious, but I also don't want to have unnecessary high-radiation tests. 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      12

      My only proof

    2. - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      12

      My only proof

    3. - knitty kitty replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    4. - trents replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    5. - Scott Adams replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,366
    • Most Online (within 30 mins)
      7,748

    Matt3179
    Newest Member
    Matt3179
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
    • Scott Adams
      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.